The NCARC biobank is an ethically approved research tissue bank. We hope it will enable important biomedical research that then leads to improvements in the prevention of disease as well as the better diagnosis, care and treatment of future patients. Ultimately the generosity and altruistic input from our patients, combined with the hard work of our staff and volunteers across the Northern Care Alliance, is crucial in allowing this to happen.
NCARC is based in Greater Manchester, and covers the Northern Care Alliance group of hospitals. It collects tissue and samples, alongside clinical data, which our patient population have generously allowed us to use for important biomedical research. These types of samples are crucial in developing important new tests, clinical procedures and medications that may go on to help diagnose and treat other patients in the future.
In the UK all biomedical research is conducted under strict rules and regulations. Our biobank is no exception, and we have obtained full permission to host the collection from a research ethics committee and the Human Tissue Authority. This means that we have standards and conditions that we need to meet and that we may be inspected to ensure that we continue to operate professionally and appropriately.
Who may donate
Not every patient will be approached, but we could ask any of them to take part in the NCARC collection part if we feel it is appropriate. Nobody is under any pressure to do so if they don’t want to. It is important that our patients fully understand what we are asking for, how samples and information may be used, and that any questions they have are answered. If anyone is unhappy with any aspect then we would not include them, and their clinical care would be not be adversely affected. We want our patients to know that we are open and transparent, and we have included an example of our consent form and the donor information sheet on this website .
What samples and data are used
We collect a range of samples. Many of these are obtained as part of routine clinical care, and would otherwise be disposed of as clinical waste. Some others additional samples (for example, blood or saliva) may be requested from patients if we feel that it is appropriate. This would always be fully explained. We also ask if the patient is happy to provide access to any samples and clinical data that may have been collected in the past, or any that may be obtained in the future, if it is not needed for their own diagnosis or care.
For samples to be of use in research, it is important that they can be correlated to the health records of the donor. We use the healthcare records that we have access to in the Trusts to pull out the key information that links to the samples. This is handled in an abbreviated or coded form, and in a way that means that we do not give researchers directly identifiable patient details. It is important to us that we respect patient confidentiality and adhere to the regulations relating to this.
How are samples stored
Samples are normally collected and stored at Salford Royal within special laboratories which have ultra-low temperature freezers. There is restricted access to these facilities and there are special alarm systems that ensure the donated samples are safe and secure.
How is research approved
When a researcher wishes to access samples and/or data we ask that they complete an application form that provides scientific justification for the work they plan to conduct. This is reviewed by a committee that includes doctors, nurses, patient/public representatives, scientists, statisticians and research governance members. If they agree that the work is important and justified then the research is authorised to proceed.
Some of the research may take place abroad, and this may be by academic (eg university) or commercial (eg pharmaceutical company) researchers. In order to keep the biobank going, we need to try and recover our running costs, so we may charge researchers a fee for access to the samples or data. Any income generated will be used to support the biobank, the NHS and to further research.